Choroideremia Research Foundation

Did you know you can support the Choroideremia Research Foundation by donating appreciated stock, bonds, or mutual funds?

Giving the gift of stock can be a meaningful way to support CHM research, community programs, and families affected by choroideremia. When you donate long-term appreciated securities directly to the CRF, you may be able to avoid capital gains taxes on the appreciation while potentially receiving a charitable deduction for the fair market value of the securities.

Here’s how it works:
1. Choose appreciated securities you’ve held for more than one year.
2. Contact CRF for our brokerage transfer information.
3. Instruct your broker to transfer the shares directly to CRF.
4. Keep your transfer records and CRF’s acknowledgment for your tax records.

Tax benefits and eligibility can vary based on your individual circumstances. Talk to your financial advisor to learn more about how you can make a gift of stock to support CRF’s mission.

Your investment could help move us closer to a future without choroideremia.

What do you wish someone had told you when you or a family member were diagnosed with CHM? 💬

A choroideremia diagnosis can bring a lot of questions, uncertainty, and emotions. Looking back, you might wish you had known something sooner. This could be about living with CHM, connecting with other families, navigating changes in vision, genetic testing, finding support, or simply knowing that you weren’t alone.

If you could go back to that moment, what would you tell yourself or another family just beginning their CHM journey?

Share your thoughts in the comments. Your experience could be the encouragement, information, or reassurance someone newly diagnosed needs to hear.

CHMer Sébastien Joachim was recently interviewed by It Starts Today – France Télévisions about what it’s like to live with choroideremia (CHM) and the challenges that come with progressive vision loss.

From no longer being able to see his wife and children’s faces as they grow and change, to navigating interactions with people in public, Sébastien shares the emotional and mental toll that living with CHM can have.

Thank you, Sébastien, for sharing your experience and helping others better understand what it means to live with choroideremia.

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CHM Gamers, This One’s for You! 🎮

We want to introduce you to fellow CHMer Blade, who creates gaming content across TikTok, Instagram, YouTube, and Twitch!

Blade mostly plays Nintendo games, including Super Smash Bros., Mario, Kirby, Pokémon, Zelda, Animal Crossing, Splatoon, and more.

If gaming is one of your favorite hobbies, check out Blade’s content and connect with another CHMer who shares your passion for gaming!

Find Blade online at

Know another CHMer who creates content around a hobby, passion, or interest? Tag them below! 👇

Do you know why genetic testing is important?

For Rob Sears, genetic testing helped uncover that his original diagnosis of retinitis pigmentosa (RP) was actually choroideremia (CHM).

His experience is a reminder that getting the right diagnosis can help people better understand their condition and connect with resources and support that are right for them.

SHARE this video with someone who could benefit from learning more about genetic testing.

Full interview available at More Than Our Story.

Do you know why genetic testing is important? For Rob Sears, genetic testing helped uncover that his original dia...

Congratulations to CRF Board Member Dr. John-Ross Rizzo on receiving the Distinguished Service Award from VISIONS during its centennial year! We’re grateful for JR’s continued leadership and dedication to advancing accessibility, research, and support for people who are blind or have low vision. Congratulations, JR, on this well-deserved recognition!

📸 Photos courtesy of Dr. John-Ross Rizzo

Choroideremia Research Foundation to Host Free Blindness and Low Vision Community Event in New York City

Choroideremia Research Foundation to Host Free Blindness and Low Vision Community Event in New York City November gathering will connect individuals and families with vision professionals, researchers, and organizations providing supportive regional resources

Meet Our Executive Director

For more than seven years, Kathi Wagner has served as the Executive Director of the Choroideremia Research Foundation, helping lead CRF through continued growth and strengthening our mission to support the choroideremia community and advance research toward treatments and a cure.

Kathi was CRF’s first full-time employee and brings nearly 35 years of experience in nonprofit fundraising and management, including work with environmental, human service, and rare disease organizations. Under her leadership, CRF’s fundraising revenue has grown from $400,000 in 2019 to more than $1 million in 2026.

While Kathi does not have a personal connection to choroideremia through her family, she is deeply committed to the people and families who make up the CRF community.

Originally from the Chicago area, Kathi now lives in Tampa, Florida, with her husband of 34 years, Joe, and their senior chihuahua-Shih Tzu mix, Tatertot. Their two adult children live in Illinois and Alabama. When she’s not working, Kathi and Joe enjoy spending as much family time as possible at Lewis Smith Lake in Alabama.

We’re grateful for the leadership, dedication, and heart Kathi brings to CRF every day!

September is Inherited Retinal Disease Awareness Month, and this year we're sharing information about some of the most common IRDs. Choroideremia is caused by a change (mutation) in a gene called choroideremia or CHM, which is found on the X chromosome. It almost always affects males and is called an X-linked disease. https://www.fightingblindness.ca/inherited-retinal-diseases/

Talking about choroideremia (CHM) with friends, family, and coworkers isn't always easy.

Because CHM is a rare condition, the people in your life may not always understand how progressive vision loss affects your everyday experiences. Communicating openly can help others better understand what you're experiencing and how they can support you.

You get to decide:
• Who you want to tell
• How much you want to share
• When you're comfortable talking about CHM
• What kind of support you need

And it's okay if those needs change over time.

Whether you're explaining how CHM affects your vision, asking for assistance, communicating accessibility needs at work, or letting someone know when you don't need help, your needs and independence matter.

Wanting additional tips for navigating daily life with vision loss? The CRF Patient Toolkit includes resources and practical information related to daily living, adaptability, technology, and more.

Explore the Patient Toolkit: curechm.org/patient-toolkit/